A story in this week’s New York Times focuses on unexpected behavior in dementia patients: “The Strange Phenomenon of Terminal Lucidity.”[i] The article raises interesting questions about the relationship of the human brain to the soul.
The story begins in 2000. A mother in Switzerland called her son in Vienna. She told him to call his grandmother who, for the last year, has been in a nursing home and not able to carry on a conversation. “Somehow, she’s back again,” she told her son. He called his grandmother. She answered and conversed with perfect clarity. She said “…for the past few months, she hasn’t really been herself…and “very, very tired.” For the next ten minutes, they shared wonderful memories of his childhood and the experiences they had together. As their conversation came to an end, “…he sensed beneath the joy a painful finality – that this conversation would be their last. Several days later, his grandmother died.”
The young man, Alexander Batthyany, became a psychologist. In 2009, he came across a journal article which included “reports of unexpected mental clarity in gravely ill people.” The article offered a term for such events: “terminal lucidity,” and gave examples. Batthyany recognized this was what he had experienced with his grandmother. He wanted to know more. He gathered a team of colleagues and sent out surveys to see if others had similar stories to share. More than 60 people responded. “In story after story, Batthyany’s respondents described elderly people who suddenly reached for a loved one’s hand; made amends for past wrongs; offered thanks; or simply seemed, through a shift in their eyes, to become present again.”
In 2014, Batthyany presented his research at a conference of the International Association of Near-Death Studies. An article summarizing the proceedings caught the eye of Basil Eldahdah, a program officer at National Institute on Aging in Bethesda, Maryland. He had always assumed damage caused by dementia is irreversible. “But if it were true that mental clarity and memory could return in the latest stages of the disease, even just temporarily, Eldahdah realized, “it would call into question our models of what’s actually going on in the brain.” In 2018 he gathered a group of experts in his NIA office to discuss the topic.
They developed a plan to use video cameras to monitor patients whose families had given permission to be part of the study. Over time, they gathered more examples. A woman who had stopped speaking for several months began speaking in full sentences with detailed memories of her late husband and her rose garden. A man with dementia who had been physically active for 10 years began staying in bed and sleeping for long periods of time. The staff felt he may be near the end of his life and called his family. By the time they arrived, he was out of bed and speaking clearly, reminiscing about his childhood. “The nurses and his family were stunned. He stayed alert like this for two days, at one point telling his family, “I’m leaving soon.” Nine days after the episode ended, he died.”
The team gathered more stories: “…many were subtle instances — a flash in the eyes, a few meaningful words — that occurred weeks or even months before death.”
The article concludes with the case of a woman named Mary who had not been communicating clearly for some time. One day she began doing so in subtle ways with the nursing staff. At first, they didn’t pick up the cues she was giving. But viewing the video later, they could see that she had been trying to express her wishes. They called the woman’s husband, who viewed the video. He too recognized his wife had been reaching out, although it was not clear what she wanted. “It may well be that Mary’s soul is back,” he told a member of the research team.
The article evoked several thoughts for me.
I have seen how difficult it can be to care for people with dementia. Family members will often say the person they knew is “no longer there” even though their physical existence continues. Anyone would hope for moments when that person would reemerge in a way we would “recognize” them again. If that occurs, it is a precious gift. But it may not.
I learned from hospice teams that someone can be declining physically and withdrawing in the final weeks, sleeping most of the time. But then they may regain energy, become alert and communicate. The family may think the person is recovering. But they withdraw again, becoming incommunicative before dying. I was taught this is common and known as “the charge” — the body summons up energy to make one last push into awareness before letting go.
Finally, I am struck by the behaviors deemed significant in the study:
· In the final moments, sensing both “a joy and finality.”
· Times when the dying person “…reached for a loved one’s hand; made amends for past wrongs; offered thanks; or simply seemed, through a shift in their eyes, to become present again.”
· “Subtle instances — a flash in the eyes, a few meaningful words.”
· Feeling a person has been far away and then sensing that “their soul is back.”
In hospice our aim was not just supporting people and their families who were being impacted by a life-threatening illness. We also wanted to recognize what living well looks like. We don’t have to wait until our last days to claim moments of soulful clarity. We can welcome experiences when we feel joy and finality at the same time. We can reach for a loved one’s hand, ask for forgiveness for past actions, be grateful for what we are experiencing, and be present with one another. It’s in those moments when we are living in our soul. We might even invent a term for such times: Living Lucidity.
[i] https://www.nytimes.com/2026/07/14/magazine/terminal-lucidity.html?smid=nytcore-ios-share
Steve Jacobsen, Ed.D 